Jump to content

Stace915

Members
  • Posts

    267
  • Joined

  • Last visited

Everything posted by Stace915

  1. I have the same thing and I have not had the test but Dr.Grubb said that I have raynauds sydrome which is why my hands and feet are always freezing and turn purple and that the sweating is just from POTS. I think a lot of POTSY's have raynauds.. I guess all this is connected. Lucky us!
  2. Thanks for the info about the doctor at Cleveland Clinic. I hope no one took what I said about Dr.Grubb the wrong way, I think he is an incredible doctor and person and he has helped me immensely. But he is just that, one person, and he has a lot to deal with in his own life right now which I completely understand however I feel like being a world-renowned specialist he has not really made the proper arrangements or suggestions to help all of his patients continue to get the same wonderful care he has given us when he is not available and I think now that his availability is even less than it used to be a lot of people are going to be trying to figure out what do. Hope this finds everyone feeling well! Staci
  3. They just called and canceled my appointment too. I have seen Beverly before and no offense to her but she is not a doctor and is not nearly as knowledgeable as Dr.Grubb. I asked the woman who called me if Grubb is referring patients to any other doctors and she said no, she is just recommending that people see Beverly. Honestly I felt like my first appointment with her was a waste of time... I know that Dr.Grubb is a person and is going through some really really difficult times in his personal life and that is completely understandable but I can't believe that he hasn't trained another doctor (not a PA) under him or take over when he eventually retires. He has a LOT of patients that rely on him and I am wondering where we are all going to go. The receptionist asked me if I was on any meds prescribed by Grubb and I said yes and he said oh well then I will try to get in you and call you back but please be patient. I am a little confused what my prescriptions have to do with me getting an appointment but I just said ok, thank you. I feel like I should start looking for another specialist, I have a local electrophysiologist but even he has said that he wants me to see Dr.Grubb because there is only so much he can do for me. Does anyone know of any other dysautonomia or POTs specialists anywhere in Ohio or within a few hour drive from Ohio? Thanks!
  4. Me too, me too! I usually switch off between sitting and standing and also have to sit for a while once I get out.. but by then I am usually way too exhausted of or dizzy or both to do my hair. When I do actually do my hair I sit on the carpeted floor while I blow dry and straighten it, and I stop every few minutes to take a break from the heat. Good luck!
  5. Are they called "nuun". I drink so much gatorade that it sounds like this tablets might be worth a try.. I hate all the sugar in the gatorade.
  6. I swear no matter how many times you explain the illness to people some of them just don't get it!!! A few weeks ago I went home to NY to visit my family and I dealt with my Aunt (who by the way has a very sick little boy, and has been dealing with his illness since his birth) you would think out of everyone she would understand but no- my Mom mentioned that we should not make plans for the day after I flew because I would most likely need to sleep and rest and flying always makes me very symptomatic and my Aunt had the nerve to get made and said that it was just that no one wanted to come to her house!!! Instead they came to my Mom's house and guess what, I was feeling so sick that I slept all day and finally got up to say hello to everyone about an hour before they left. I guess the term "ignorance is bliss" would come into play here!! Happy New Year to all and I wish everyone a happy and HEALTHY 2009! -Staci
  7. Hi, Dr.Grubb started me on Adderall about a month ago. I am taking 10mg a day and then still taking midodrine in the afternoons. My appetite was gone for the first 2 weeks and then it seemed to come back a little. Dr.Grubb did speak to me about Provigil and Concerta but he said that in order to get one of them (sorry I am having a pots brain fog and can't remember which one it was) but that in order to take one of those two, you have to first try adderall and I think it was the provigil, and if those two don't work- then and only then the insurance companies will cover the concerta. Again, I might have gotten the provigil and concerta backwards. Good luck, also have you discussed Cerefolin with your son's doctor? the mix of the that and the adderall over the last month has made a tremendous difference in how I feel.
  8. I get it in my hands and arms pretty often but once in a while, either after fainting or when I am really symptamatic and come close to fainting it happens to my mouth and face. I have mentioned it to the doctors and they said its just the lack of blood flow. They didn't seem to concerned about it so now its more of a nussance than anything else!
  9. Glad to hear she is home and hope she is able to get some rest now that she is back in her bed!
  10. I am at work (yay first day all week I have felt up to making it into the office) so I can't access my Myspace but I have a links to a few articles and websites as well as a "blurb" I wrote myself. I don't know if you are familiar with the spoon theory but that seems to be a good for helping people to have a better idea of what we all go through on a daily basis, also the website dynakids.org is for children but explains things in really cut and dry terms. Hope that helps!
  11. Hey everyone, I know a majority of us suffer from headaches on a daily basis. Lately every single day after I eat lunch I get an awful headache, on the verge of a migraine.. and it makes me nauseous. I have been taking Excedrin migraine and I am waiting for my PCP to call me back but I was just wondering if this happens to anyone else. It doesn't seem to matter what I eat or if I have a small meal or large... Staci with a bad headache!!
  12. Hope you are doing a little better... keep your head up! We are all here for you Staci
  13. I'll bring personal mini fans that we can give out as party favors, and some salty tortilla chips to enjoy with the virgin-margaritas! I'll bring my puppy too, he is funny to watch and can provide entertainment and keep some of the kids occupied so their parents can relax! Oh and we can make jello shots out of gatorade lol.
  14. Thanks everyone, I am TRYING to stay positive and praying that the good days out weight the bad.
  15. Usually I deal with living with a chronic illness pretty well, but after missing an entire week of work and being in bed for 6 days straight so exhausted and fatigued that I could barely lift my head I am really having trouble staying optimistic. It has been a little over 3 years of this nonsense. I have had some months where I feel "ok" and then some where I think I am going to die because I feel so terrible but lately I can't help but dwell on the negative and the things that I am not able to do in my life. My best friend just got married and I think being a part of her wedding really upset me, I tried to dance at her wedding and of course got so lightheaded and my bp was so low that I had to sit down right away and basically layed with my head down on the table chugging water until I felt semi normal again. I can't help but think that if I get married I won't be able to dance at my own wedding, I won't be able to stand for pictures, I won't be able to go on a honeymoon to the beautiful tropical island that I have always dreamed of because I can't tolerate the heat. I KNOW that there are people out there who are a lot worse off than I am, and I should be thankful for what I have and that I don't have a life threatening illness etc... but I am sick of people saying that I could improve and look how much I have improved all ready since I was diagnosed. The truth is yes I have improved and I have also regressed and its been an ongoing pattern... and although it would be wonderful to improve more than I have I honestly don't think its going to happen and for once I just want someone to be honest with and say, you know what you're right- chances are you won't get any better and it *****! Plain and simple it ***** and its not fair!!!! At 27 years old I shouldn't need handicap parking and miss weeks of work at a time and have to worry about having enough money to pay for my medication, I shouldn't have to worry that me not feeling well limits my boyfriend or family and friends from doing things that they want to do because I don't feel up to it. I shouldn't have to worry that I can't have a child because there is a 25% chance of me passing on this stupid illness we all call POT's and a chance of me also passing on Ehler Danlos syndrome. If I have all of these issues at 27, I can't even imagine what I will be like at 60, 70 or 80. IT'S NOT FAIR!!! I want to spend my summer enjoying the nice weather, and do one of my favorite things, laying on the beach and not make plans all time and with the stipulation-- as long as I feel up to it. I don't want people to say find new things that you like to do, and tell me that they understand how I feel when I say I am exhausted because truth is very few people actually understand. I don't want to hear "well at least you look good" one more time, I know its meant to be a nice thing but it makes me want to scream!!! I want to be able to not worry that an hour air plane ride is going to make me feel so awful that I need to sleep for days after to recover! Again yes I realize that I am lucky to be alive and not be as sick as I could be, but you know what now that I have realized that and have a better appreciation for life, isn't it time for me to get better and get on with my life???? I am having such a hard time understanding what I did wrong do deserve this and why anyone of you on here has to deal with this, yes what doesn't kill you makes you stronger but you know what, at this point I am strong enough. I don't want to play anymore.. I surrender and throw up my white flag, I do not want to deal with any of this anymore, I want it to go away. I want to trade my poor health in for that of a healthy 27 year old! Before someone asks, no I don't see a therapist and I have no interest in it. I just needed to vent to people that would actually understand. Thanks for listening (reading) my rant!! I hope this finds everyone in good spirits and health
  16. Hi there, I actually flew this weekend and saw Beverly yesterday. I don't do well with compression hose, all they seem to do is make me uncomfortable and sweat. For me the most important thing is to make sure I drink a lot while flying and after I fly. I usually bring water and gatorade.. and rest the day after I fly (if I can). As far as seeing Beverly, this was my second time seeing her and I have seen Dr.Grubb once. I was supposed to see Grubb 2 weeks ago but along with everyone else my appointment was cancelled so I saw Bev instead. I was a little hesitant about seeing her because she is a PA and not as knowledgeable as Dr.Grubb is, but she was definately very helpful. Different than Dr.Grubb but still helpful. The office told me that Grubb may not be back at all but for right now they are still rebooking his appointments but that unless Bev strongly reccomends that you see him the wait will be at least 13 months (and those rebookings could be cancelled if he doesn't come back). Good luck!
  17. Yes, my appointment was canceled and they were not able to reschedule until March of 2009!! I understand needing to take care of his personal issues but I have already waited a year for this appointment and now it will be another whole year.
  18. My first appointment took a year to get, then I saw his PA six months after that and now this appoinment is I think about 9 months from when I saw her. I call every so often to check on cancellations but they are rare!
  19. I always like to see if anyone else has an appointment when I go to see Dr.Grubb. It would be nice to actually meet some more potsy people
  20. I am 27 and completely understand what you mean about being so young and feeling cheated. I always say I have been through more medically than most 80 year olds, and laugh that I am on so much medication. If it doesn't kill you it makes you stronger, right! So as far as I am concerned everyone on this site must be an extremely strong human being to be making it through all of this. Keep your head up, we are all thinking of you~
  21. I thought it was great to actually get the word out about any sort of autonomic dysfunction, but I do have to say I got really upset watching it because I felt like I was watching myself!
  22. I know I should call the doctor and ask but Grubbs office always takes a while to return phone calls and I feel like sometimes people in here are just as knowledgeable. I just got over bronchitis and I am still not feeling great and its definitely affecting my POTS and my blood pressure. I am terrified that I will get the flu this year but I didn't know if the shot would affect this condition. Anyone know?
  23. The subway was the worst for me, the heat, the standing... I had my first fainting episode there. Thank god I moved and can drive everywhere now!
  24. I was on Wellbutrin for a month along with all my other meds and celexa. I was told that the combo of celexa and wellbutrin was the same as taking cmbalta (which my insurance doesn't cover). Beverly gave it to me and told me that the wellbutrin would help imensly with my fatigue and lack of energy.. but it had the opposite effect. I literally could not keep my eyes open at all while I was on it. I put a few calls into Bev and never got a return call so I called my local cardo and he told me to stop taking the wellbutrin immediately that sometimes it has that effect on people. I have been off it for about a week now and I am back to my usual level of fatique and sleepiness but its def not as bad as I was on the wellbutrin!
  25. yes it happens to me too, the doctor explained it that when I faint (or come close), I usually get nervous and try to fight it and end up starting to hyperventalate and thats what causes it. I was told not to worry too much about it.
×
×
  • Create New...